Monday, March 12, 2012

With the Lorax on Friday night and the zoo yesterday you would think I was ready for a quiet night at home but the weekend was capped off by getting to see Disney on Ice with Hope Kids tonight! Jackson went last night with his parents and shared some pictures so I was so excited to go.

As soon as the lights went down I kept whacking Mommy and pointing as each new character skated onto the rink. I was so happy that I followed right along clapping and dancing. At intermission, we found we were sitting right next to Mason and his parents and older brother! My parents met Mason's parents during my jaw distraction a year ago as they were waiting for him to come out of heart surgery. Although the parents had seen pictures of each other's children this was the first time to see the kids in person. Mason is doing great and won't need more surgery for a few years hopefully. Although Mason and I have very different surgeries, we have much in common when it comes to the medical challenges we face now and in our future. And because of Hope Kids both Mason and I as well as our parents have the opportunity to have some fun knowing that all these families share a common bond and similar experiences. Thanks Hope Kids!

It was going to be a beautiful day and we had plans to meet up with Daxton and his family at the zoo. Daxton is a few months older than me and he has Nager Sydrome too. Although his Mommy and my Mommy have emailed and talked on the phone we have never met in person. Since we share some of the same doctors (including Dr. Morales) it's amazing we haven't run into each other at Primary Children's!

As we were headed out to meet them, Daxton's Mommy called to let us know they were having car trouble. Even after spending a few hours trying to get it fixed, there was still a problem so they had to cancel. I was pretty ticked off because I was bound and determined to go to the zoo, so late in the afternoon Mommy and I went to the zoo on our own. It was packed and it took 20 minutes to find a parking spot but we had a great time!

Rub a dub dub, two cousins in a tub! Because of the pain catheter, I haven't been able to get in the tub since the surgery. Today we went back to Primary Children's to see Dr. Morales and get the pain catheters removed. As soon as he walked in the room I started crying. Before he could pull the catheters out, though, he remembered that there was a stitch holding them in place (good thing Mommy didn't pull them out like she wanted to!). Off he went to the OR to get some scissors and when he returned my parents had to hold me down on the exam table while he cut the stitch, removed the catheter and then pulled off the tape from each side. There was still some more tape before the catheters could be completely removed but I was having none of it, so Dr. Morales cut off the catheters from the ball and left the remainder taped in place for my parents to get rid of later. At least I was finally free of carrying around the ball!

When Mommy came to pick me up, we got to go play with Jackson and I got my bath. After the bath, Mommy had Aunt Kristin hold me down so she could remove the last bit of tape. The only thing left now is steri strips but as I have repeated to everyone who will listen - those will fall off on their own!

Sunday, March 4, 2012

What a great day! I had another great night's sleep and when I woke up at 7:30, Mommy held her breath to see if the vomiting would start back up but it never did. I was back to my old self - chatting, smiling and even chuckling at a show on TV. Mommy still tried to keep me bed bound most of the day to rest up but by late afternoon I was starting to get antsy so we went to visit cousin Jackson (he'd been sick with a sinus infection) and Papa Smith (he is still recovering from back surgery). I was a little unsteady on my feet from not walking since Thursday morning but in a great mood. I am still pretty swollen and starting to bruise but I only complained of pain once and went through the day on only one dose of pain medication. I even felt well enough for a little soda and animal cookies. And just to show that I am really back to my old self I started irritating the dogs again!

After a wonderful night's sleep (12 hours!) Mommy figured we would have a great day together while Daddy had to head into work. Before Daddy even made it out the door though, I woke up and vomited. It was such a small amount Mommy thought it probably wasn't a big deal and started a slow feeding while I watched some TV. But within an hour I threw that up. Mommy was starting to get a little concerned but decided to let my tummy rest before starting Pedialyte an hour later. And just like in the hospital the rest of the day was the same cycle of getting feedings and then vomiting them up about 90 minutes later. As the day progressed, I got more lethargic and went hours without speaking except to plead "no more food". Mommy as getting more and more worried. So after 8 hours and 6 episodes of vomiting Mommy broke down and called Dr Williams. Since we weren't sure if it was a motility issue or constipation (no bowel movements since Wednesday) he called in an order for glycerin suppositories (constipation) and Phenergan suppositories (nausea). His recommendation was to start with the glycerin first to rule out the constipation. If that didn't work then give the Phenergan to treat nausea. But he warned that I would have to make a judgement call if neither of them worked at some point we would have to go to the ER to prevent dehydration. At that point they would place an IV and decide if I needed to be readmitted.

Mommy was off to the pharmacy once again but while getting the suppositories, the technician mentioned a little trick she used with her child to make the process easier. She applied some Ambesol to the "area" about 30 seconds ahead of time so it would be a little numb. She said it worked like a charm for her daughter.

Mommy got home and tried out the little trick (hard to say how much it helped since I knew what she was going to do and wanted no part of it) and within 20 minutes of the glycerin I was producing results in the bathroom. (Sorry no photos!) A few minutes later, Daddy hooked up a feeding of Pedialyte and an hour later when there was no vomiting he started some formula. My mood continued to improve over the next few hours and my parents breathed a sigh of relief - no ER trip tonight!

After six rounds of vomiting, Mommy knew something just wasn't right she just didn't know what was causing it. Was it the pain ball, the Nubine (IV pain medication), the Lofran (anti nausea medication)? So Mommy told the nurse that it was time to call Dr Williams (the resident on call) to see what to do next. He didn't feel like the pain meds were causing the issue so he ordered a Phenergan suppository to repalce the Lofran as an anti nausea medication and Reglan to speed up the motility of my belly and replaced the Nubine with Torradol (ibuprofin). About 6 am the nurses turned off my feeds except for the IV fluids and held me down to put in the Phenergan suppository. I was not a happy camper but afterwards the nurse gave me a choice between a teddy bear or a dolly.

Over the next few hours, I tried to vomit several more times but nothing came up. With the Reglan on board and no vomiting for a few hours the nurses started back up the Pedialyte and once I could hold that down, they added in my soy formula. Within hours I was like a new girl, I even started telling them I had rumblies in my tummy and to give me more formula because I was hungry!

When Dr Williams stopped by as things were starting to improve, Mommy asked whether I could be discharged today. Since the pain had been controlled well the only issue was the vomiting. At 2 pm he wanted an update from the nurse and then would decide if I was well enough to go home.

Uncle Jason stopped by around 10:30 and brought Mommy some coffee and food since Daddy had to go to work and she was on her own. I was still pretty grumpy but as he was leaving, they gave me a dose of Torradol and within minutes I was back to sleep. Mommy had spent all night trying to convince the nurses that I hate having blankets over my body and I refused to put pajamas on. So Mommy kept covering me up, but I wasn't having any of it and preferred to be just in my panties. The nurses were worried I was going to be a little shy but even one of my bum cheeks was hanging out for everyone to see and I could have cared less! In fact, I spent most of the day with my hand down my panties as if I was Al Bundy!

By noon I was much perkier and playing with toys and watching DVD's. Mommy got a call from the front desk and I had a delivery. It was a Hello Kitty Edible Arrangment. I was feeling so good I even licked several different fruits. Thank you Aunt Kristin, Uncle Lonnie and Jackson!

At 2 pm, Grandma Glenda came by for a visit and Mommy finally got a chance to get a real meal at the cafeteria. Since I was doing so well, Mommy asked the nurse to call Dr Williams and let him know we wanted to go home. He must have said okay because they started in on the discharge paper work. While we waited I was getting pretty grumpy about the IV and how much I disliked it. The only thing that seemed to help was a foot and leg rub around the IV. So Mommy worked on the leg with the IV and I had Grandma Glenda work on the other leg just for fun. Whenever they would stop I would yell "rub me"! I have always been a little diva and what better time to be a diva then while I am in the hospital?

Finally it was time to remove the IV and head home. I had just been given my last dose of Torradol so I was pretty out of it but woke right up when the IV came out. Then Mommy quickly got me dressed and packed all my stuff up in a wagon and we were out of there!

Mommy and I headed home and had a little time to relax before Daddy got home from work. While he worked on snow blowing the 6 or so inches of snow we had gotten over night, Grandma Glenda came by so Mommy could get my prescriptions filled. Since Mommy was pretty wiped from her night in the hospital, I went to bed with Daddy and off she went to get some much needed rest. So glad to be home!

Saturday, March 3, 2012

So although my surgery was not scheduled until April 16th, Dr Morales had a cancellation and was able to get me in today. Wednesday afternoon Mommy got the call that we needed to report to the hospital at 11:15. Daddy had a meeting in the morning, so he left as usual and would meet us at the hospital later. When I woke up, I got to have a few hours of watching T﻿V in my jammies before it was time to go. Mommy and I left a little early and we stopped by Target so I could pick out a toy for after the surgery. I decided on a bath toy but Mommy also let me pick out a few items from the $1 bins.

Once we got close to the hospital, I asked Mommy where we were going. When she told me the hospital, I asked her why because I wasn't sick. She told me that we were meeting Daddy. OK so technically that was true but she left out the part about the surgery.

We met up at the pre surgical area and Mommy let them know not to pull out the jammies because that was my trigger that I would be staying overnight. Instead, I cooperated with getting my temp, heart rate, heart and weight and while we waited I had a great time playing with the $1 pack of dinosaur erasers.

We then moved to the pre op play area where I was given the Versed. Since I was still in my clothes I had no clue what was about to happen. A volunteer brought over a hospital buddy for me to decorate. I drew on two eyes, a nose, a mouth, hair and a trach. Considering I was a little loopy, I thought I did pretty well! When Mommy asked if I wanted to draw a button on my doll, I proceeded to draw three "buttons". Mommy was a little confused until Daddy explained I actually drew buttons while Mommy had been referring to my feeding tube that we usually call button.

About the time I finished up my masterpiece, the anesthesiologist Dr Liu approached. Cuddled in Daddy's arms I was still feeling okay about life but then we got up to go. I hopped in the little police car to drive down the hall but everything came to a crashing halt when that is where my parents turned to walk the other way and Dr Liu started pushing me in the opposite direction!

While I went off to surgery, my parents headed to the cafeteria for a late lunch while they waited for news. While there they discussed the pros and cons of delaying telling me about the surgery. The hospital material recommend telling kids my age about a week ahead of time. Mommy thought with my personality that was just way too soon - that would be 7 days for me to stress about it! Daddy figured this would probably be the last time they could fool me this way and next time we would not be so lucky. Since Versed can act as an amnesiac she is hoping that I don't even really remember the point at which I realized I was headed to surgery and just remember all the fun I had until I found out!

After a hour, Mommy got a call from the OR nurse that they were half way through. The nurse said that I cried for Mommy when I first got back but eventually complied with what they needed me to do before the anesthesia took effect (little stab to the heart for Mommy there) but I was doing fine. Another hour passed and then Dr Morales brought my parents into a room to discuss the procedure. When he went in he found that I essentially have no tempomandibular joints at all - it is just complete bone at this point. He is not sure if it has been that way since I was born or if it has solidified over the years from the pressure of the 2 jaw distractions that have been completed. He cut the bone on both sides and inserted a sheet of silicone to help prevent the bone from reforming as scar tissue. Then as it starts to heal the hope is it will form cartilage in between the bone to create a pseudo joint. Depending on what ends up happening will dictate what procedure to do next. Meanwhile, I will need to start stretching the area so the muscles don't pull the bone back.

The hope is that in two weeks I get in to Dr Yamashiro and he makes a mold of my mouth to use to create a Therabite. Two things have to go right for that to happen - the first is that I cooperate and allow him to make a mold - espescially since I will be one sore cookie when he wants to jump in my mouth in a few weeks. The second is that they have a Therabite small enough to fit in my small mouth opening.

If either of those things don't work the way we want them to, then we will have to stretch my mouth the old fashioned way - by adding more and more tongue depressors to stretch it. Dr Morales said I would need to have my mouth stretched 2-3 times a day for at least six months but possibly as long as a year. Therapy for my mouth just like therapy after knee surgery, etc.

About 20 minutes later, Mommy got called back to recovery to see me. I was just starting to wake up so Mommy climbed into the bed with me. Even so, I was getting pretty agitated and the nurse asked me if I was hurting and where my owie was. I pointed to the big scab on my hip where I had fallen last week. Mommy thought I was probably in pain so I got dose of Fentanol that knocked me out within seconds. Mommy and the nurse spent some time chatting and eventually they decided I could move to a room. In the hall we met up with Daddy and although Mommy tried to point out all the fun pictures on the ceiling I barely opened my eyes. Once in room 3503, I continued to sleep for quite a while as the new nurse got my room set up for the evening. Over the next few hours I got started on Pedialite and got some more medication, but most of my pain is supposed to be controlled by the On Q pain catheter aka "pain ball". A little catheter runs from each of the two incision sites to a sensor taped on my chest. My body heat helps the sensor regulate a slow drip of the medication into the incision site to keep the area numb. The catheters then travel from the sensor to a filter and then on to the "ball". In the ball is enough medication and saline for 72 hours. The ball starts out hard and about the size of a softball but as the medication is used it starts to suck in upon itself. The On Q ball comes with a carrying case for when I am on the move.

A few hours in to my Pedialite feed I vomited up a lot of blood. I was starting to wake up a little though so Mommy had Child Life bring in some arts and crafts projects. I started to play a little but it was getting late so Daddy headed home since he had work in the morning. As Mommy and I were finishing up the first project and we were starting up some formula I vomited up a second round of blood. Although the pain was really well controlled the rest of the night went like this:

1. Sleep for approximately 90 minutes

2. Wake up and tap Mommy on the shoulder

3. Vomit into the bed pan Mommy barely gets to me in time

4. Clean up the vomit

5. Color my art project for 30 seconds

6. Fall asleep coloring

And then back to the beginning of the cycle. This went on 5 more times during the night until Mommy demanded a new plan around 5 am. To be continued....